I think it is important that people understand my writing process, so that when you read my blog you don't think I am in the midst of a potential emotional crisis.
Typically by the time I am at the point of writing things down I am either over the current crisis or I am out of the midst of the crisis and writing is my way of processing. This doesn't mean that I never write when I am in the middle of a crisis, but I do try to write when I am not in the middle of the emotional moment so that I don't write things I will regret later.
Typically an issue or incident occurs, then I survive it, then I process it and then I write about it. So by the time you read it, the incident is over and there is an ending to what I have written about. I appreciate the comments of support more than you can ever know. It means the world to me to know that people are in our corner and that I have a community who understand the crazy we live in. I just don't want people worrying unnecessarily and felt it was important to let you all in on my writing process.
I have given a lot of thought recently to making my blog private or making people sign in before they read my blog, but over the years I have had people reach out and say they are living through a similar life that I never would have guessed would benefit from my blog. For that reason I don't want to make it private because that would create a stumbling block for sharing our story.
People have reached out who have family members who share David's genetic duplication, and people have reached out who have children who struggle with mental health issues and fetal alcohol syndrome. For this reason I am keeping my blog public but I do have concern that it is upsetting people recently and I am trying to be very sensitive to this as my goal is not to upset my children's teachers, or therapists or my family members or friends. This is me writing about our story from my perspective. At times my perspective and understanding of life is wrong or one sided, but also I am juggling a full plate, and so often I am dealing with multiple issues at the same time.
I am working on getting some help for myself because I realize I am currently juggling too much and feeling overwhelmed. The biggest message I want to share with you all is that I am ok- I am stressed and at times overwhelmed, but for the most part I am ok. Between raising these 3 boys, juggling school needs for them, and juggling a new self direction program for them that is supposed to make respite easier, but has truly just added a lot of work to my already full plate, there are tons of ups and downs. However, the ups are higher because i have often waited a long time for them, but that often means the downs are lower than average, but we will get through them.
Last week I read through my blog and realized what dark times we have come through. By comparison, we are doing so well. And for that I am forever thankful.
Sunday, July 19, 2015
Saturday, July 11, 2015
Truth of being a special ed mom times 3
First and foremost, if you are easily offended or think this might upset you.....just stop.....you don't have to read it.
Second, if you recognize yourself or someone else in any of what I have to say......stop....realize I could live and cope with any one or 5 of these things, but all together it is too much......so if I seem too sensitive, it is because all together, for me, alone, this is too much. If that makes me appear weak, I'm sorry. If I am too sensitive to the perfect facebook world, I know that already, but it doesn't make the pain that it causes any less real.
Third, know that I had stopped writing because my writing was upsetting people. Know that since I stopped writing, I am living feeling like I am going to implode, so if I don't write I can't cope. Do I have to publicize my writing, no. If I don't publicize my writing though, no one will know some of the hell that this is. No one can understand because when you ask "how are you?' I answer "good" or give you a brief hint of what is going on. When I start to really tell you, because I think you might really have time to listen, often your eyes blank over and I assume it is too much, so I stop.
I am not trying to write to offend, but I am writing my feelings, as I feel them, as life is impacting me given all that is on my shoulders. This is not a "cry for help" or a woe is me post, but it is a "this is what it takes to be a single mom to 3 kids with special needs post, from the trenches".
Life since June
1. I planned on giving Matthew the summer off from school- sometimes a kid just needs a break, and I felt like he was in a good spot for a fun summer. I am the granddaughter of a camp director, I am the niece of 2 camp directors, I was a camp director...I believe strongly in the power of camp. I wanted my kids to have the experience of camp. I worked hard to plan for the "perfect summer" for Matthew. I spoke to the staff at both camps he was to attend. I prepped them for who he is, what he needs and we discussed how it would work.
I got a phone call from the district that I needed to make a firm decision- if he attended summer school they needed to hire a bus attendant and if he didn't, they wouldn't. That made total sense to me, so I bit the bullet and with a pit in my stomach, I decided no summer school.
Day one of camp #1- i was met with concerns and it became apparent that this may not work. I quickly shot off an email to the district begging for a summer school option and researched other camp options for Matthew. The camp was not saying "no" after one day, but I didn't have time to wait a few weeks to make a decision, I needed feedback quickly and to decide so I could create Plan B.
The District was AMAZING! They were quickly responsive and offered us a summer school program. I was beyond thankful, because I had chosen to say "no" to summer services and while it would have been hard, they could have said there was no way to add summer school for him.
I contacted another local summer camp and worked with the administration to find an option for matthew for this week- he did Blacksmithing Camp and LOVED it! it was truly incredible. My boy made a metal spoon, fork and hook and it was amazing!
Matthew finished off week 1 at the first camp, and with tears in my eyes and a heavy heart I explained to him that he would not be returning. I explained that he did nothing wrong and I held him as he cried. It was painful to hear the "why do I have special needs", "why doesn't friend X have special needs", "what did I do wrong". In reality I had no answers......The camp is about "hang time" and "loose structure" and Matthew needs structure, he needs routine. I wish this was something that could have been created for him, but the camp director in me knows that you can't make a camp program for one kid.....however the mom in me really wishes we could.
2. I attended a wonderful CSE meeting where there was laughter and happiness as we officially approved a summer program for Matthew, and we solidified his school year program. I was told the make up of the class, and we were set to go forward. I thanked everyone, and left happy. I was sad that he was heading back to summer school, because I wanted him to go to camp, but happy that the school, the district and I had worked well together and I felt supported.
Then a day later the shoe dropped- the class make up was not what was expected. The age range was larger. I panicked. I know that this was not done on purpose, and I know that everyone has Matthew's best interest at heart. I do not question this- this alone is huge growth.
However, as Matthew's mommy, I am scared. I don't want him with kids who are much older. I want him to maintain his innocence longer. I want him to be 14 while he is 14, not try to keep up with older kids. The hardest part is that I am internally often so torn inside. I know my boy needs summer school. I get that. I agree with that. However, I pictured him outside playing, swimming, laughing at camp. Then I swallowed hard and changed the picture, and now I am being asked to change it again and include summer school with much older kids.
I am putting my trust in his school. I am putting my trust in our District, I am doing this more easily than I have in a long time, my head knows this is the right choice, but I can't get my heart to stop screaming "LET HIM GO TO CAMP!" This is the internal struggle. This is no one else's fault and yet the screaming won't stop.
3. His Blacksmith program had an open house which we went to on Thursday night. I was there with my heart in my throat the whole time and tears in my eyes. My son, the one who years ago was playing with fire and scared me to death, was working with metal and fire to create pieces of true beauty. He did it with respect and amazingness. His teacher loved him, and tutored him through the entire process. He was out in the woods, in a blacksmith shop and he was just a regular 14 year old boy.
This is what he is leaving to go back to school. Nature, camp, woods, adults teaching him new skills. If only this was offered full day, he could go there, but it is only offered until 12:00. If only I didn't have to work, he could go there, but I have to work. If only......if only.....if only.
Do you see why I am crying? Do you see why this is so hard. He was typical.....I got a glimpse of my boy, in a typical setting, being typical. He learned a new skill. He succeeded. If only..........
4. David's seizures are back......I have watched him now have 6 seizures. I have watched him struggle. He takes 4 anti seizure medications, and yet the seizures are back because he is going through puberty. he is back with that cough/vomit thing he does at night, so every cough all night long I panic. He is back with the behavioral stuff that comes before a seizure, so every behavior has me worried.
He was a mess at school the other day, and I have no idea why. My best guess is he had a seizure at some point, but I wasn't there, so I don't know. All I know is he was behavioral, and then it stopped and I wasn't there.
Do you know how hard it is to be at work while your son is struggling? Focus on work, get it all done....it is all too much. I am in my office crying, and then wiping away the tears because I am at work. Work is my escape, my sanity and I love it....but it is hard to be at work when my boys need me.
5. We are working on a new program called Self Directed Services through OPWDD which is supposed to mean that I work with a broker to hire staff who can support the boys in the community gaining new skills. The broker is supposed to help me find staff and access therapies for the boys in the community. So far the broker has done nothing. She cannot seem to write an advertisement that seeks staff that is not full of typos and errors. She cannot seem to correctly manage payroll for the staff that I had already hired. it is error after error and I am monitoring everything. Instead of this being easier, it is consistently harder.
I am juggling this program for Matthew and David, and alone this could be a full time job. The support that I am supposed to have in the way of a broker needs constant monitoring.......I am not the only family struggling with this, but likely I am the only family juggling this for 2 kids as a single parent, and it is hard and exhausting. The agency and broker keep apologizing for the errors but I just need the errors to stop so that I can have help.
Hiring any new staff person to work with the boys takes 8 weeks- do you know anyone who wants to wait 8 weeks to start a new job? A part time job? Most people want to start immediately. Then for each person I have tried to hire, the hiring process with this agency has been a mess, so I am juggling the hiring of a new person who just wants to work, and until they can get through the hiring process they can't start working ........exhaustion!
6. We have hit the point that the boys are emotionally and developmentally all younger than my friends kids. My friends kids have moved on. They are beyond where we are. I knew it would happen, but I wasn't prepared for the pain. We are making new relationships, new friendships.
My kids are playing best with kindergarteners/1st graders- developmentally that is where we are. It is just hard to see people moving on, and to be standing still.
I have a 14, 11 and 8 year old and yet I can't leave the house without a babysitter. Most 14 year olds are starting to babysit, and yet mine still needs a babysitter. I am not sure I will ever adjust to that, it is just hard..
7. When people are with us, they are asking for a break, some down time from the chaos, a break from the crazy. Trust me! I hear you! I would LOVE a break. Some down time, some quiet. The difference is, you can leave, I can't.
I will never adjust to the noise, the constant chatter, the chaos. If I could create discipline to make it stop, know that I would. If you have suggestions, i am happy to listen. However, in reality, before meds kick in and after they wear off, we are left with chaos and crazy. In the middle of the day, I can hope for a little more control but even then it is iffy at best.
8. Even Jacob is really struggling. He is a child who is labeled as emotionally immature due to ADHD and globabl developmental delays. The other day we talked about relaxing on the weekend. He didn't know what a weekend was. He is 8.5 years old.
Did you actually sit down and teach your child what "weekend" means? There are so many thing he needs to be taught, that other kids just pick up on. So much that I don't know where to start. When I realize he has a gap, I fill it in, but i assumed he knew "weekend".
9. I made a decision to send Jacob to summer camp most weeks and summer school only 3 weeks. He is a kid who thrives on learning about animals and science. I needed him to have these hands on learning opportunities. Also, summer school for him is only Tuesday, Wednesday and Thursday 8:30-11:30. I work Tuesday-Friday full time over the summer. I can't leave at 11:30 to pick him up, it isn't realistic. I have no child care who can be here for him 3 days per week at 11:30, and even if I did where would he go Monday and Friday.
Given all of these pieces to the puzzle, I made the best choice I could. However, I am watching him slip backwards without school. His speech is becoming harder to understand, his math abilities are slipping. Yes, I know....tutor him......have you tried to teach a child skills at 5:30 on a beautiful summer night when all of the neighborhood kids are outside or he wants to go to the pool? I am working on it, but you know what? I want him to play....he is only a kid once! And yet again, watching him struggle breaks my heart....why can't it all just come easy?
10. I am tired. I feel like I am collapsing under the weight of all that is on my shoulders. I am dealing with my own chronic illnesses that rear their ugly heads when I am on overload. I am running as often as I can so that I can destress and feel relief, but as I run around the block I am worrying that my boys are struggling and so I am worrying as I run.
I know that these bumps will get better- things will improve with time. But as a mom to kids with special needs, am also learning that there is an underlying feeling of "this isnt what I planned". My visions of parenthood didn't include life long care for my kids who are not developing independent living skills. My vision didn't include self contained classrooms with ratios of 1:1 care. I realized the other day that I have children who require 1 adult to 1-2 kids at school, and I am parenting 3 of them alone. It is a lot to juggle.
And yet, when we are out in a kayak, or on the beach creating sand castles, I love every minute of our life! I get to keep my boys little while yours are growing up. I get boys with such innocence while yours are becoming teenagers....so there are gifts to this life, but there is also pain, and I guess right now the pain feels more raw than normal.
This is the life of a mom to 3 kids with special needs. This is life raw......this is our world that is not posted or talked about on facebook.
Second, if you recognize yourself or someone else in any of what I have to say......stop....realize I could live and cope with any one or 5 of these things, but all together it is too much......so if I seem too sensitive, it is because all together, for me, alone, this is too much. If that makes me appear weak, I'm sorry. If I am too sensitive to the perfect facebook world, I know that already, but it doesn't make the pain that it causes any less real.
Third, know that I had stopped writing because my writing was upsetting people. Know that since I stopped writing, I am living feeling like I am going to implode, so if I don't write I can't cope. Do I have to publicize my writing, no. If I don't publicize my writing though, no one will know some of the hell that this is. No one can understand because when you ask "how are you?' I answer "good" or give you a brief hint of what is going on. When I start to really tell you, because I think you might really have time to listen, often your eyes blank over and I assume it is too much, so I stop.
I am not trying to write to offend, but I am writing my feelings, as I feel them, as life is impacting me given all that is on my shoulders. This is not a "cry for help" or a woe is me post, but it is a "this is what it takes to be a single mom to 3 kids with special needs post, from the trenches".
Life since June
1. I planned on giving Matthew the summer off from school- sometimes a kid just needs a break, and I felt like he was in a good spot for a fun summer. I am the granddaughter of a camp director, I am the niece of 2 camp directors, I was a camp director...I believe strongly in the power of camp. I wanted my kids to have the experience of camp. I worked hard to plan for the "perfect summer" for Matthew. I spoke to the staff at both camps he was to attend. I prepped them for who he is, what he needs and we discussed how it would work.
I got a phone call from the district that I needed to make a firm decision- if he attended summer school they needed to hire a bus attendant and if he didn't, they wouldn't. That made total sense to me, so I bit the bullet and with a pit in my stomach, I decided no summer school.
Day one of camp #1- i was met with concerns and it became apparent that this may not work. I quickly shot off an email to the district begging for a summer school option and researched other camp options for Matthew. The camp was not saying "no" after one day, but I didn't have time to wait a few weeks to make a decision, I needed feedback quickly and to decide so I could create Plan B.
The District was AMAZING! They were quickly responsive and offered us a summer school program. I was beyond thankful, because I had chosen to say "no" to summer services and while it would have been hard, they could have said there was no way to add summer school for him.
I contacted another local summer camp and worked with the administration to find an option for matthew for this week- he did Blacksmithing Camp and LOVED it! it was truly incredible. My boy made a metal spoon, fork and hook and it was amazing!
Matthew finished off week 1 at the first camp, and with tears in my eyes and a heavy heart I explained to him that he would not be returning. I explained that he did nothing wrong and I held him as he cried. It was painful to hear the "why do I have special needs", "why doesn't friend X have special needs", "what did I do wrong". In reality I had no answers......The camp is about "hang time" and "loose structure" and Matthew needs structure, he needs routine. I wish this was something that could have been created for him, but the camp director in me knows that you can't make a camp program for one kid.....however the mom in me really wishes we could.
2. I attended a wonderful CSE meeting where there was laughter and happiness as we officially approved a summer program for Matthew, and we solidified his school year program. I was told the make up of the class, and we were set to go forward. I thanked everyone, and left happy. I was sad that he was heading back to summer school, because I wanted him to go to camp, but happy that the school, the district and I had worked well together and I felt supported.
Then a day later the shoe dropped- the class make up was not what was expected. The age range was larger. I panicked. I know that this was not done on purpose, and I know that everyone has Matthew's best interest at heart. I do not question this- this alone is huge growth.
However, as Matthew's mommy, I am scared. I don't want him with kids who are much older. I want him to maintain his innocence longer. I want him to be 14 while he is 14, not try to keep up with older kids. The hardest part is that I am internally often so torn inside. I know my boy needs summer school. I get that. I agree with that. However, I pictured him outside playing, swimming, laughing at camp. Then I swallowed hard and changed the picture, and now I am being asked to change it again and include summer school with much older kids.
I am putting my trust in his school. I am putting my trust in our District, I am doing this more easily than I have in a long time, my head knows this is the right choice, but I can't get my heart to stop screaming "LET HIM GO TO CAMP!" This is the internal struggle. This is no one else's fault and yet the screaming won't stop.
3. His Blacksmith program had an open house which we went to on Thursday night. I was there with my heart in my throat the whole time and tears in my eyes. My son, the one who years ago was playing with fire and scared me to death, was working with metal and fire to create pieces of true beauty. He did it with respect and amazingness. His teacher loved him, and tutored him through the entire process. He was out in the woods, in a blacksmith shop and he was just a regular 14 year old boy.
This is what he is leaving to go back to school. Nature, camp, woods, adults teaching him new skills. If only this was offered full day, he could go there, but it is only offered until 12:00. If only I didn't have to work, he could go there, but I have to work. If only......if only.....if only.
Do you see why I am crying? Do you see why this is so hard. He was typical.....I got a glimpse of my boy, in a typical setting, being typical. He learned a new skill. He succeeded. If only..........
4. David's seizures are back......I have watched him now have 6 seizures. I have watched him struggle. He takes 4 anti seizure medications, and yet the seizures are back because he is going through puberty. he is back with that cough/vomit thing he does at night, so every cough all night long I panic. He is back with the behavioral stuff that comes before a seizure, so every behavior has me worried.
He was a mess at school the other day, and I have no idea why. My best guess is he had a seizure at some point, but I wasn't there, so I don't know. All I know is he was behavioral, and then it stopped and I wasn't there.
Do you know how hard it is to be at work while your son is struggling? Focus on work, get it all done....it is all too much. I am in my office crying, and then wiping away the tears because I am at work. Work is my escape, my sanity and I love it....but it is hard to be at work when my boys need me.
5. We are working on a new program called Self Directed Services through OPWDD which is supposed to mean that I work with a broker to hire staff who can support the boys in the community gaining new skills. The broker is supposed to help me find staff and access therapies for the boys in the community. So far the broker has done nothing. She cannot seem to write an advertisement that seeks staff that is not full of typos and errors. She cannot seem to correctly manage payroll for the staff that I had already hired. it is error after error and I am monitoring everything. Instead of this being easier, it is consistently harder.
I am juggling this program for Matthew and David, and alone this could be a full time job. The support that I am supposed to have in the way of a broker needs constant monitoring.......I am not the only family struggling with this, but likely I am the only family juggling this for 2 kids as a single parent, and it is hard and exhausting. The agency and broker keep apologizing for the errors but I just need the errors to stop so that I can have help.
Hiring any new staff person to work with the boys takes 8 weeks- do you know anyone who wants to wait 8 weeks to start a new job? A part time job? Most people want to start immediately. Then for each person I have tried to hire, the hiring process with this agency has been a mess, so I am juggling the hiring of a new person who just wants to work, and until they can get through the hiring process they can't start working ........exhaustion!
6. We have hit the point that the boys are emotionally and developmentally all younger than my friends kids. My friends kids have moved on. They are beyond where we are. I knew it would happen, but I wasn't prepared for the pain. We are making new relationships, new friendships.
My kids are playing best with kindergarteners/1st graders- developmentally that is where we are. It is just hard to see people moving on, and to be standing still.
I have a 14, 11 and 8 year old and yet I can't leave the house without a babysitter. Most 14 year olds are starting to babysit, and yet mine still needs a babysitter. I am not sure I will ever adjust to that, it is just hard..
7. When people are with us, they are asking for a break, some down time from the chaos, a break from the crazy. Trust me! I hear you! I would LOVE a break. Some down time, some quiet. The difference is, you can leave, I can't.
I will never adjust to the noise, the constant chatter, the chaos. If I could create discipline to make it stop, know that I would. If you have suggestions, i am happy to listen. However, in reality, before meds kick in and after they wear off, we are left with chaos and crazy. In the middle of the day, I can hope for a little more control but even then it is iffy at best.
8. Even Jacob is really struggling. He is a child who is labeled as emotionally immature due to ADHD and globabl developmental delays. The other day we talked about relaxing on the weekend. He didn't know what a weekend was. He is 8.5 years old.
Did you actually sit down and teach your child what "weekend" means? There are so many thing he needs to be taught, that other kids just pick up on. So much that I don't know where to start. When I realize he has a gap, I fill it in, but i assumed he knew "weekend".
9. I made a decision to send Jacob to summer camp most weeks and summer school only 3 weeks. He is a kid who thrives on learning about animals and science. I needed him to have these hands on learning opportunities. Also, summer school for him is only Tuesday, Wednesday and Thursday 8:30-11:30. I work Tuesday-Friday full time over the summer. I can't leave at 11:30 to pick him up, it isn't realistic. I have no child care who can be here for him 3 days per week at 11:30, and even if I did where would he go Monday and Friday.
Given all of these pieces to the puzzle, I made the best choice I could. However, I am watching him slip backwards without school. His speech is becoming harder to understand, his math abilities are slipping. Yes, I know....tutor him......have you tried to teach a child skills at 5:30 on a beautiful summer night when all of the neighborhood kids are outside or he wants to go to the pool? I am working on it, but you know what? I want him to play....he is only a kid once! And yet again, watching him struggle breaks my heart....why can't it all just come easy?
10. I am tired. I feel like I am collapsing under the weight of all that is on my shoulders. I am dealing with my own chronic illnesses that rear their ugly heads when I am on overload. I am running as often as I can so that I can destress and feel relief, but as I run around the block I am worrying that my boys are struggling and so I am worrying as I run.
I know that these bumps will get better- things will improve with time. But as a mom to kids with special needs, am also learning that there is an underlying feeling of "this isnt what I planned". My visions of parenthood didn't include life long care for my kids who are not developing independent living skills. My vision didn't include self contained classrooms with ratios of 1:1 care. I realized the other day that I have children who require 1 adult to 1-2 kids at school, and I am parenting 3 of them alone. It is a lot to juggle.
And yet, when we are out in a kayak, or on the beach creating sand castles, I love every minute of our life! I get to keep my boys little while yours are growing up. I get boys with such innocence while yours are becoming teenagers....so there are gifts to this life, but there is also pain, and I guess right now the pain feels more raw than normal.
This is the life of a mom to 3 kids with special needs. This is life raw......this is our world that is not posted or talked about on facebook.
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